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Discussion Starter · #1 ·
Hi there, I'm pretty new here - (joined a while ago but never posted or read). Actually, last time I was here I was still pg with my youngest. She's 2 now. She was born with teratologic hip dysplasia - her femur heads were above her socket and she couldn't move her legs at the hip socket, and her legs were rotated outward (when she bent her knees her heels came towards each other). She also had a clubfoot and has since been diagnosed with hypotonia, GERD, venous angioma on her cerebellum and a micro duplication of her 16th chromosome. We're told by geneticists that she has "syndrome" facial characteristics. She's been tested for everything under the sun and is scheduled for a muscle biopsy next month. She is also scheduled for her 2nd hip surgery next month - a pelvic osteotomy followed by a spica cast for 6 weeks or so. My question: are there other therapies we could use for her hip dysplasia? The problem is that her femur keeps slipping out of the socket and therefore the socket is not forming properly, it's still flat. She had her first surgery to put the bone in the socket when she was 8 months old and was in the spica for 6 months then. She is developmentally delayed and still is unable to stand unassisted or walk unassisted, though she can pull herself up and stand leaning onto something and can walk with a walker short distances, her pelvic area is very unstable, she moves like a hula dancer when walking or even standing. She also has sensory issues - was very sensitive until she was around 18 months old (that's when she would finally eat solids or drink liquids - up until then she was exclusively breastfed). She also had limited range of motion in her face - didn't smile until she was over a year old. She didn't reach for toys or hold things until she was 10 months old and she didn't have a spatial awareness of her body until she was close to 18 months old - she would hold something in her hand and not know how to get it to her mouth - she would just look at it and scream at me to give it to her. Anyway, we have recently seen a rolfer, but he's kind of vague about how/if he can help her and I've spoken with 5 other rolfers on the phone and they all refused to treat her or see her until after her hip surgery. I'd love to avoid surgery - especially since it's a pretty major surgery this time - but want to give her the best possible outcome - and with the hips the longer we wait to do things the rate of success goes down - especially at her age. Anyway, any thoughts are appreciated. Just trying to figure out what best to do with her....we want the best for her and are being told by some people that surgery will just lead to further complications, but by others that if we delay surgery she'll have arthritis and pain in her hips her entire childhood - until she 's old enough for a hip replacement. Anyone deal with something similar?<br><br>
Thanks!<br>
Marcia
 

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Our PT thought my son's hips were coming out of place. She said though that the therapy we had accidentally used was often used for non-mobile babies:<br><br>
Doubled large cloth diapers. Basically it imobilized the joint.<br><br>
You might check into a DO who does osteopathy. We have one who is in a PT office.
 

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My son has it but we just do the therapy ourselves and his is getting better... Probably no need for surgery (His was only in his left hip)
 

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Discussion Starter · #4 ·
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<div>Originally Posted by <strong>Khourtniey</strong> <a href="/community/forum/post/8141806"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">My son has it but we just do the therapy ourselves and his is getting better... Probably no need for surgery (His was only in his left hip)</div>
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What type of therapy do you do? How old is he? Thanks!
 

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<img alt="" class="inlineimg" src="/img/vbsmilies/smilies/notes.gif" style="border:0px solid;" title="notes">:
 

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Given the age of your child, I would guess that double diapering and less invasive methods would be ineffective. Pavliks, abduction braces, double diapering, etc. are usually only successful with babies that are well under a year.<br><br>
If you have reservations, and it sounds like you do, I would seek the opinion of another pediatric orthopaedic surgeon. Each hip baby presents with his or her own issues and treatments are best left to the professionals, imo. What works for one child may not work for another...though information gathering is always a good idea. We've had at least a dozen children in our family born with hip dysplasia and nearly all have been treated differently...from double diapers to hip surgery and everything in between.<br><br>
Hugs from a momma of two hip babies!
 

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Discussion Starter · #7 ·
Thanks for the ideas. We went ahead and had the surgery done (well, her right side, her left will be in a couple of weeks). After doing extensive research and even sending her x-rays out to get 2nd, 3rd and 4th opinions it seemed to be a consensus that it's what she needed for the best possible outcome (she is over 2 years old and still dealing with this). I think sometimes the hardest part though is dealing with other people who are a part of the "natural community" giving you dirty looks or making comments as if you've abandoned everything you believe in by "putting your child under the knife". Ugh. As if we didn't agonize over this again and again, then to be questioned and treated as if we were enthused about it is sad and a bit ridiculous. Oh well, guess it's like every other decision we've made as parents, we did as much research as we could, consulted with people on all sides of the issue and then made the best decision we knew to make and we have every right to hold our head high about that, regardless of what anyone thinks. Thanks again for the ideas and support. She's doing great and adjusted beautifully to the spica cast. She's such a good sport!
 

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Seriously, if anyone questions your intentions, they are fools. You did your research, consulted professionals, and came to a conclusion that is best for your child's well-being.<br><br>
My son was having serious ear infections, to the point many were asking why I didn't have tubes put in. In searching for a solution, my doctor and I decided to take him off of all dairy products, to see if it would help. AH HA...no more ear infections.<br><br>
There is a place and a time where alternate methods work and can spare babies from surgery, like my son's EIs. However, if his hips needed surgery after trying less invasive methods, I wouldn't bat an eye.<br><br>
I'm so glad your little one is adjusting well to life in the cast...I hope you are as well. When do you go back for a post-op visit?<br><br>
Best of luck to you both!
 
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